3rd surgery complete!!!!!!!!

This was started a few days after we got home from the hospital, but I was unable to finish, till now, due to an array of issues from lack of internet, to sick children, tons of doc appts, and simply no time... now to finish!

Hey everyone! Thank you for your love, support, encouragement, dinners, lunches, gifts... Words can't explain our appreciation and gratitude for each and every one of you.

It was one of the hardest, but most beautiful weeks of our lives. Seeing our son go through the pain and suffering absolutely broke my heart, and I would have traded with him in an instant if it was ever possible.

But, guys, I am so blown away by my little 4 year old boy... he is the epitome of what being brave means. He completely embodied strength and he did what he had to. Through all the tape removal, chest tube removals, IVs and arterial lines removed... Through the cleanings and the medications that tasted absolutely horrible, he allowed all of these things to happen.

Micah's first two surgeries occurred before he was 6 months old. This time, with a fully cognitive child, aware about every single bit of it, my heart endured so much pain, The love of a mother is so painful when it comes to the suffering of her babies... Leading up to this surgery, we told Micah and talked him through what was going to happen. He knew that he was going to be cut open and that he would be asleep during it. When he asked if he would hurt when he woke up, we were completely honest with him.

We felt like it was the best thing, for our family, to fully inform everyone. Our children cried for their brother, Micah cried because he was scared, and my husband and I cried. We knew that this battle was something that we could not escape, and we decided to face it with open arms. We knew that our boy would have to suffer, and we knew it was going to be hard... Micah found me sitting in the kitchen, just moments after I scheduled his surgery, crying... and he put his hand on me and comforted me and told me that he would be ok, with the hugest smile on his face. That, of course, made me cry more, but it gave me strength. This boy, you guys...

Last minute pre-op!

Surgery actually got pulled up a day earlier than scheduled, and we only got a day warning! We scrambled to find sitters and cover our bases, but we made it work. We prayed for God to keep his hand on the entire situation, and that if this was His will to have surgery sooner, that we would trust him. We showed up at 6am on Tues, Nov 29, 2016, and we waited.

Last time, on record, that we show him below 94%!

Auntie Rachael, Micah, mommy

After being in the waiting room for hours, we were told that they had an emergency case that came in, for an infant, so we had to wait a bit longer. Micah's surgery was supposed to be first case, around 7:30am, but we waited until about 1:30pm for him to finally get brought back. Micah hadn't eaten since the night before, but he literally never complained. He played for hours with a car track with my sister, sat with mother in law and father in law for a while, giving hugs and kisses, spent time with my dad, myself, and my husband, played with other toys, and watched kid by kid come through and head off to surgeries of their own (from g-tube surgeries, to clubbed feet repairs, to other surgeries).

Grandma, Grandpa, Daddy, Micah

Playing with Auntie Rach

He saw Santa while we were waiting for surgery!

Micah was given what we call the "goofy" medicine. It relaxed him and made him silly, and eventually sleepy. He had a really great anesthesiologist, named Dr. Sean Gamble, take him back. He made things fun and kept Micah comforted for him. We are SO grateful for him that day.

Just got goofy medicine!

Nice and relaxed

Ready to hand him over...

Once Micah was in, my husband and I met our family and pastor back down in the cafeteria. We ate lunch and talked and joked, every now and then thinking about the reality that our son was currently in the middle of open heart surgery. After a total of about 5 hours, we finally heard that his surgery was complete and that it was a perfect SUCCESS! Thank you, JESUS CHRIST!

His toes are the same color as mine for the first time in his life!

My husband and I were allowed to see him about an hour later, once he was in his room. When I saw him, one of the first things that I noticed was the fact that he had PINK toes! With o2 assistance, Micah was at 98% o2 saturation for the first time in his LIFE!

The next several days, things blurred together a bit... He was weaned off of o2 completely by day 3. He is now able to attain 96% by himself without any assistance! Micah came out with three chest tubes, helping him drain the chest cavity of excess fluid. With the Fontan, this procedure, high fluid build up is one of the number one issues that kiddos tend to face. Thank God that Micah had zero issues with this. Micah was able to have all chest tubes removed on day 4, I think. Seeing those come out was so hard to watch... it was excruciating for my boy... but he did it! Seriously, so so proud of him.

This doll was made specifically for Micah, showing him exactly how many tubes and lines, etc, were in him, so that he knew what was coming out prior to each removal

Sitting for the first time

Getting bandages changed, first time

Eating solid food for the first time

In so much pain every time he had to get up while his chest tubes were still in :(

chest tube bandages cleaned. He was so brave

I took this picture to show how intense things were for my poor boy. This is one of his chest tubes

Time to remove chest tubes!

SO excited to be allowed to have pickles!

NO OXYGEN ASSISTANCE!

He's so pink!

He was visited by a therapy dog!

First time going for a walk

Where his arterial line was

Yay! 95%!

Some of his nurse practitioners

A few of his doctors! Dr. Bar-Cohen wore a tie just for Micah this day

After all the wires and tubes and IVs were pulled out, after he learned to move on his own, gained back some strength, and turned back to his goofy self, it was time for Micah to get discharged from the hospital! My husband and I had to be educated on several things before we were released... As always, we were reminded about not being able to pick Micah up under the arms for the first 8 weeks post op. Micah's sternum was opened up, so his bone needs time to heal safely and properly. He has to be on a low fat diet for the first 6 weeks post op, because this specific heart surgery increases the chance of fluid building up in the chest, and fats create fluid, as well. The third thing we needed to learn about was the medication Warfarin (also known as Coumadin) - I plan on creating another blog specifically on that, so hopefully I actually sit down and find time to do that.

He finally got his lollipop!

Our family is COMPLETE! Thank you, Jesus!

So, we are home, now! As I write this, Micah is already 1 month post op. He is sitting with our family, watching Home Alone II, lazing around on the couch. God is good, my family is together. As we continue to adjust to medications, meet with doctors, and get weekly blood draws to monitor how well coumadin is working in his body, life is becoming more and more normal, once again.

If you read all the way down to here, thank you so much for your time! God bless you in whatever you're going through in your life right now!

***Micah will have another angiogram around the time he's a pre-teen. They will also take a biopsy of his liver, to see how the new blood flow in his heart is affecting it. If he is going into liver failure, which is a big possibility, then he will be put on medications to counteract that. If that doesn't work, then it will be time to look into a heart transplant. All in God's hands!